For the newly diagnosed...

[Guest guest]

I'm posting this here from another board for the new people who still don't

understand about this disease and are afraid or had thought they were crazy

.... or told " it's all in your head " . In January of this year (almost 4

years after diagnosis) I hit rock bottom and somehow found myself on the

computer looking up this disease. On the day I found my first GD board I

spent hours and hours just reading and crying, relieved to know I wasn't

alone anymore, that others had experienced some of the worst sides to this

disease and KNEW what I was going through and could understand. This post

here and the next one I am sending are the 2 I printed up and made my

husband and kids read...it helped more than anyone could know to make a

difference in myself and my family once they too began to understand.

I do want to note that this person had chosen RAI for treatment, same as I

did...that RAI is a PERMANENT option, once done, there is no going back and

trying to obtain remission or using any other treatment. Since I have been

the RAI route (rushed into it without first learning about this

disease...all treatments etc.) I just want to say that this is NOT a *quick*

fix for GD, there are repercussions down the road using this treatment as

the first step, and the permanent step.

In this post, some of the symptoms may seem extreme, I have experienced many

of them myself...after RAI and I was left to go hypo ( " because hypo is

easier to treat " ...NOT) there are a whole set of other symptoms. There is

no set pattern of symptoms, not everyone will experience all of these.

I hope that these two posts will help others newly diagnosed the way they

helped me.

Jody

Post # 1

What you have described been there, and the worst is that I remember being

there, in hell. It seems I have suffered with this since I was a teenager,

but my parents who both have thyroid problems didn't notice it in me. I am

39 years old and feel sometimes like 60. My severe moments started in 9/98.

I started to throw up and wouldn't stop, I kept loosing weight and could not

control bladder or other side movement. Ended up wearing adult diapers so I

don't have an accident. Could not work for 6 months and then lost the job I

had because they said my sort term disability expired and I was too

embarassed to go on long term disability. My hair was falling out and fast,

even my eyebrows and eye lashes were beginning to thin out fast. My pubic

area was experiencing the same, as well as my arms and legs. My vision was

changing fast. I din't know but i got blurred vision at first then double

vision. That was fun! On the lighter side of this, I was able to see money

on the street, contact lenses on the floor, every spec of dirt, twice and

even found jewelry walking one day, that no one else could see, but I could

cause I saw it twice. On the heavier and more dangerous side was that

driving was becoming a hit-or-miss. Trying to place a cookie sheet in the

oven, I had to close one eye and try to center the objective. My eyes were

dry and crusty, never slept for more than 3 hrs at a time and then I was

sleeping 18 hours a day and still felt totally wiped out. Could not get off

the couch or bed, could not take care of my 3 year old, or my 10 year old or

my 13

year old. I had no interest in sex, fun, laughing, the only thing was

crying. I could not eat without choking, I could not stop my heart from

racing, my pulse was so high that I though a freight train was going by. I

was having 12-18 bowl movements a day. I was having panic and anxiety

attacks, I considered suicide, but din't know why? I was very depressed, I

dropped out of evening classes because I could not stay awake. Nothing I ate

had any flavor to it, then the worst started to occur, I was loosing my

memory. I could not remember where I was going, who I was, I had to start

writing notes as to what I am suppose to do every minute of the day. I had

to write directions to my doctors office and read them as I was driving.

I was experiencing severely heavy periods, leg and muscle cramps, shaking,

back aches, and my speech was now becoming slurred. My for a 37 year old, I

was falling apart. Nobody knew what to do to make

me feel better, I could not stand noise, I din't want quiet, I din't want

lights, but din't want dark. There was nothing anyone could do to make me

feel better or worse.

The other thing was occurring simelteneously is I was getting gray very

fast. I had never had gray hair, and within 2 week period, I was looking

like I was in my late 50's. It was like watching my life go past my eyes and

mirror fast and furry. It was like watching Tim in the movie the Santa

Clause. It scarred me, and everything I did or everywhere I went, I felt

that this was my last moments. I know this was not right, but din't know how

to help my self, until one day, this person who I knew was a type A

individual, very aggressive, very intelligent, very outgoing, very flexible

and very confident was not the person I saw in the mirror and did not like

it. My road to recovery was to start with the RAI. After 3 months of having

RAI, I was begginning to see some changes but not fast enough. I push my

self alot to the extreme and now I couldn't even get my self going.

I started by looking at old pictures and memorizing faces, names,

birthdates, addresses and other information of family members I forgot. I

started to memorize phone numbers, directions, and sports

trivia. I started to use a day timer again and organize my life and

thoughts. I got a new job that I love and respect and they respect me. I

love my husband more today than yesterday and I know I need him

forever as well as my children. I started doing things with them again. Not

fast, but slowly, went to their sports practices. During my recup time, I

kept my 3 year old at home from day care and she was my

angel. She would get up in the am and bring me juice and turn on the t.v. so

I can watch cartoons to make me feel better. She use to bring me a wash

cloth for when I got my hot flashes,my older children took it upon

themselves to clean, wash and cook while I was held in GD pergatory. My

husband loved me every second and tried so hard to make me forget my

condition and kept telling me how much he loved me and

it will be ok. When I felt good, even for a few minutes, I let them know and

we did something together.

I gained alot of weight from going hypo, and now I am hoping that I can

start loosing. Last night I returned to school, I have 6 classes left before

I finish my Bachelors degree in Int'l Business Management

and it was wonderful. The greatest feeling I got was that I took notes and

remembered the lecture and told my family about it.

I have rambled on enough, but I can't help thinking that I am a better

person and kinder person, then I was before GD. I thank my god for his

patience with me and thank my family for being there. I know its

hard and it seems impossible to concur, but we are warriors and we don't

give up, just like GD doesn't give up. Keep smiling everyone and have a good

and healthy weekend. It is wonderful to be able to share

with so many of you my experiences that others could not understand, thanks

so much to the people who put in so much work on this site and everything

that they are doing to bring more awareness, God Bless

you.

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